A red Empire Building marks World AIDS Day.
When Julie Simpson* fell ill with body aches, fever, a rash and vomiting in 2005, she thought she had a particularly nasty case of the flu. she got better in a few weeks, but the symptoms soon returned. Julie’s doctor had her blood tested for Ross River fever, hepatitis A and, finally, Human Immunodeficiency Virus (HIV). “I didn’t think for one second that I was at risk,” recalls the 32-year-old health promotion coordinator from Melbourne. “I’d been in a relationship for five years with a man who was the second sexual partner I’d ever had. so when the test came back positive I was in absolute shock.”
To add insult to the horror, Julie discovered her partner, Damien* – who also tested positive to HIV – had been sleeping with two other women and having occasional one-night stands with men. “I felt so incredibly angry, let down and violated,” says Julie. “Damien and I had used condoms until getting the all-clear with sexual health tests, but then he betrayed my trust by having unsafe sex!”
With the spectre of HIV/AIDS hanging over her young life, Julie completely fell apart; she wept uncontrollably, fully convinced she’d be dead by 30. while her family were extremely supportive, they, too, were crushed and some of her friends broke down when she told them. “Many were stunned someone just like them had contracted the disease,” she says. “One friend, who is very religious, said if I’d waited until I’d got married it would never have happened, hurtfully implying I was being punished for living in sin.”
Such emotional reactions to HIV have changed little in the wider community since the first death in 1981. back then, news of a terrible and lethal new “plague” raced around the planet. the disease, we were told, was transmitted through sexual contact – the very cornerstone of human existence – and gay men seemed particularly at risk. In Australia, the first case was diagnosed the following year and in 1987, as the number of diagnoses continued to rise, the federal government aired a shocking TV ad depicting grim reapers hurtling bowling balls at terrified men, women and children, killing them all with AIDS.
Julie was just nine when the Grim Reaper appeared in Australian living rooms, and her fears about HIV were well entrenched. But after being diagnosed, “I educated myself about my disease and realised that people with HIV can live a mostly normal life,” she says. “I take three tablets a day to lower my viral levels, which are almost undetectable now.”
A year after her diagnosis, she met a wonderful man who isn’t phased by the virus”, and they married two years later. “Obviously, we always have sex with condoms and I sometimes grieve that I will never have children, but I don’t want to pass HIV on, even though the risk of doing that is low,” says Julie. “Right now, though, I am incredibly grateful that I’m so well.”
Today, 30 years after it first appeared, HIV has largely slipped from the public consciousness and mainstream health campaigns, but it remains a global epidemic. In Australia, there are around 20,000 people living with HIV and 1000 new cases are diagnosed each year**. In the US, there are now up to two million cases, around one million in Europe and in Sub-Saharan Africa, where 67 per cent of all people with HIV live, more than 22 million are infected with the virus.
HIV severely compromises immunity, destroying important protective white blood cells called T cells and allowing all manner of infections to take hold, and sometimes kill. Around 10–15 years after it’s contracted, HIV often turns into Acquired Immune Deficiency Syndrome (AIDS). the disease can be transmitted through sex, sharing needles and transfusion from contaminated blood (though blood has been screened in Australia since 1985). It can also be passed from mother to child during pregnancy, childbirth and breastfeeding. Thankfully, antiretroviral drugs became available in 1995–1996 – just in time to save lives the world over.
Despite medical breakthroughs, the World Health Organization’s latest figures show a staggering 33.4 million people were living with HIV worldwide in 2008, while two million people died from AIDS that year. Tragically, 2.1 million children are HIV-positive, with more than 1000 children newly infected globally every day. while generations considered it a disease of the gay community, “women aged 15 to 35 are one of the fastest growing groups to contract HIV globally”, says Stevie Clayton, a consultant in HIV policy and program development, and former CEO of the AIDS Council of New South Wales.
The latest figures show that 29,395 Australians have been diagnosed with HIV and 6776 have died**. “But HIV figures are slowly creeping up,” warns Clayton. According to the National Centre in HIV Epidemiology and Clinical Research in Sydney, the number of new HIV diagnoses from heterosexual sex increased from 841 in 2002–2004 to 1185 in 2005–2009. if these worrying trends continue, according to research from the University of New South Wales, parts of Australia could be facing a surge of HIV infection rates in the next seven years.
It’s unlikely Gen Y has anything more than a faint recollection of the Grim Reaper-driven apprehension of the 1980s AIDS explosion. Now considered one of Australia’s most notorious and effective campaigns, the Grim Reaper ad was taken off air after several weeks due to a barrage of public complaints. “I admit the ad was confrontational,” says Dr Neal Blewett, the then federal health minister. “But an alarming rise in the heterosexual spread of the virus in Africa made us realise we needed a hard-hitting message to teach Australians the importance of safe sex and using condoms.”
Although the safe-sex message was clear, the public was still prone to HIV hysteria. “In the early days, there was anxiety because we just didn’t know the mechanism of transmission,” explains Suzanne Crowe, who helped set up the first Victorian HIV clinic in 1984, and now heads the Centre for Virology at the Burnet Institute for Medical Research and Public Health in Melbourne.
“I remember holding my breath when I needed to examine the eyes of an HIV-positive patient who was going blind.” Such was the climate of fear, Crowe was asked by an airline to wear a full-body, yellow plastic suit and mask when she travelled as medical escort for a US man returning home to die of AIDS in 1985.
It was amid this atmosphere of terror that three-year-old Eve van Grafhorst became the very public face of HIV discrimination in Australia. In 1985, Kincumber Preschool and Gosford Council in NSW demanded her removal after she was diagnosed HIV-positive.
Born three months premature, Eve had contracted the virus from the 10th of 11 blood transfusions while on life support. “It still really hurts to remember what people did,” says her mother, Gloria, now 58 and living in the UK.
“We were treated as though we were evil and subjected to hatred and ignorance when we needed care and support.”
Hounded by the media and shunned like lepers by neighbours and strangers alike, the van Grafhorsts fled to New Zealand in 1986, where the local community warmly embraced them. Eve was offered places in three kindies and had many loving friends. “People are so nice to me here, they don’t spit at me or kick me,” the little girl marvelled at the time. Tenacious and loving, Eve remained a busy activist for HIV awareness until she died peacefully in 1993 in her mother’s arms at the age of 11. “We all miss her so much and living without her is still very painful,” says Gloria.
Even today, prejudice and stigma ensures many of Australia’s HIV-positive patients remain secretive about their condition. “The Grim Reaper ad may have raised awareness, but for gay men, it increased discrimination because people tend to see the people with the virus as the grim reapers, not the virus itself,” says Max Niggl, coordinator of the Positive Speakers Bureau, which trains HIV-positive people to educate the community.
Melbourne man David Menadue was 32 when swollen glands led to his HIV diagnosis in 1984. “Those first few years were very bleak and I felt alone and stigmatised by headlines such as ‘Die you deviants’,” says the 58 year old. “I didn’t plan ahead because I thought I had no future.” As his T-cell count plummeted, Menadue suffered fatigue, oesophageal thrush, tuberculosis and life-threatening diarrhoea. “There were times I was told I only had six months left or 18 months to live, so reaching Mardi Gras each year was a huge milestone,” says Menadue, who lost around 200 people he knew to AIDS and was one of the lucky ones, though it’s not clear why some people lived while others didn’t. “All of us who lived through that period carry deep emotional scars.”
Alongside the wave of HIV came a shameful tide of homophobia, and gay men were harassed and spat on in the street. As HIV infections progressed to AIDS, deaths rose in the ’80s and peaked in the ’90s, particularly in Sydney. “Some men were only 18 and 22, going blind or suffering dementia, pneumonia or telltale purplish cancerous skin lesions while they wasted away, grieving for a life they would never live,” recalls Ann-Maree Sweeney, who was a 22-year-old nurse in 1990, when she started a six-year stint caring for AIDS patients at St Vincent’s Hospital. “It was like being in a front-line during a war that nobody won. I still struggle with recurring flashbacks and sadness.”
The suffering wasn’t limited to gay men. “I thought no-one would want to touch me, be with me or ever have sex with me again,” says Michelle Wesley, 45, from Sydney, who was diagnosed with HIV in 1989 after injecting heroin while travelling in Italy. “I felt tainted and dirty, and socially disgraced.” by the time Wesley returned to Australia to die, the then 27 year old was underweight, vomiting daily and unable to walk due to severe HIV-induced shingles. “I was put on 32 tablets a day, which kept me barely alive, while my fantastic family cared for me,” says the support and advocacy worker for Positive Women Victoria. Then in 1995, a new class of antiretroviral drugs became available. “It saved my life,” states Wesley. “It felt like a miracle.”
Thirty years on, Australia’s swift handling of the HIV/AIDS crisis is today held up as the gold standard response to HIV by the United Nations. As time passes and haunting memories fade, HIV is barely registering on the radar of Gen Y as they enter new relationships, or Gen X as they come out of marriages and back on to the dating scene. In the ’90s, HIV testing was almost a rite of passage for 20-something heterosexuals. cut to the present and it hardly merits a tweet.
“We have let young people down by failing to educate them with media campaigns and focus on HIV,” says Max Niggl. According to a 2008 Galaxy report, in the previous two years in NSW alone, 57 per cent of people aged 18–29 had engaged in sex with a partner without using a condom, while a startling 78 per cent said they didn’t use condoms in current sexual relationships despite having unsafe sex with at least two other partners.
“The increasing disregard for safe sex concerns me,” says Vince Lovegrove, 63-year-old journalist, writer, TV producer and ex-manager of the Divinyls and Jimmy Barnes. “There’s still a misconception that heterosexuals are not at risk of HIV, but I know firsthand that it can destroy families. It killed my wife, Suzi, at 33 and son Troy at the age of eight.”
The vivacious and beautiful Suzi Sidewinder most likely contracted HIV from a bisexual boyfriend she dated in New York in the early ’80s. In 1985, four years after she and Lovegrove first met, the part-time actress was diagnosed HIV-positive at 29, after experiencing dizziness and unusual skin rashes.
“We were both stunned and went home and held each other and Troy and just rocked back and forth for a long time,” he says. “For days, we wept whenever we locked eyes and I felt great guilt that I wasn’t infected, which may be because HIV spreads less easily from women to men. Then I pulled myself together and braced for the emotional trauma so that I was strong enough to care for my family.”
Suzi insisted her husband make a film about her illness to educate people about HIV. the resulting, award-winning documentary, Suzi’s story, was screened in 90 countries and broke the hearts of Australians when it aired in June 1987, just weeks after Suzi’s death. It detailed her anger, frustration and grief during a spirited and stalwart battle with AIDS and the illnesses it caused, such as cancer and motor neurone disease. “In the last year, it was heartbreaking to watch as she became a prisoner in her out-of-control body and felt wracked with guilt that she had killed our son,” says Lovegrove. “In the end, I would have to strap her head to the bedhead to try to control the shaking enough to spoonfeed her while I held her jaw still.”
Six years after his mother’s death, in 1993, the courageous Troy died, too. “When Troy came home from hospital to die, he was wasting away, wracked with diarrhoea and starving to death because he couldn’t eat,” says Lovegrove. “After he was gone, my grief was at times overwhelming and crippling. But from that pain I became more spiritual and learnt to live more in the moment.”
Had Troy or Suzi been diagnosed today, their prognosis would be a longer life in greater health. A breakthrough discovery in September 2010 has given a new lead for ways to find a cure for HIV. “We have identified how HIV gets into resting cells and then hides there – sometimes for years – where the immune system and HIV drugs can’t fight it,” says Professor Sharon Lewin, who has led the research as co-head of Melbourne’s Burnet Institute Centre for Virology. “This discovery will hopefully allow us to develop new medications to target and block dormant HIV.”
HIV treatment has sprinted far ahead of the days when affected people took 30 or more pills. Often these drugs caused terrible side effects like anaemia, headaches, nausea and even bone marrow suppression. “Far better treatments have led to a far improved prognosis for people like me because they prevent the immune system from being destroyed,” says 33-year-old Gary Taylor from NSW, a media professional who was diagnosed with HIV in 2006. although the treatment is a far cry from the early days, the societal reaction has been much the same. “The stigma of HIV has certainly been hard at times,” says Taylor. “I’ve suffered discrimination at work and found it far more difficult to find a permanent partner. But I don’t let the virus define who I am.”
Gary’s is a cautionary tale about mixing alcohol and sex – a well-worn combination that’s as familiar to baby boomers as it is to Gen Y; as common among gays as it is among heterosexuals. “I prided myself on practising safe sex, but one night I had too much to drink and let my guard down with a male acquaintance and that’s all it took to contract the disease,” explains Taylor. “Now, I’m on drug treatment for life and face the accelerated conditions of ageing currently being discovered as people with HIV get older.” But rather than hide away, Taylor has become very involved in speaking about safe sex to stop complacency. “Whether you’re young or old, a guy or a girl, gay or hetero, being open and proactive about the ever-present risks of HIV is the best protection any of us have.”